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OSMOND — Summer is rough for 10-year-old Danny Anderson.
It doesn’t seem like so long ago when he’d be outside all day long, splashing in the blow-up pool with his family’s German shepherd, Roxy.
That was before doctors shuffled him in and out of operating rooms so often that his mother, Mary Anderson, lost count of the surgeries. Before she and her three other sons learned to live at the hospital for more than a year.
Now, Danny gets dehydrated easily in the sun. He can’t run through sprinklers or take a dip in the pool because the catheter leading to his heart can’t get wet.
But the hot, hazy months also equate to more childhood accidents. Mary Anderson regrets that this statistic is good for her, as another family’s tragedy could save Danny.
This summer means waiting for “the call” from the University of Nebraska Medical Center saying they’re ready to give Danny a quadruple organ transplant.
When Danny was 4 years old, he stopped growing.
He’d been a fussy baby, so stiff that a geneticist thought he might have cerebral palsy. At a year old, he already had a gastronomy tube so he could receive nutrition straight to his stomach. Danny’s g-tube matched that of his older brother, Connor Anderson. A genetic syndrome made it so if either boy ate something, it could go down the wrong pipe and sit on their vocal chords or fall into their lungs.
Doctors had told Mary Anderson that Connor’s condition was so rare, it was as if she sneezed at the wrong time during pregnancy. It wouldn’t happen again, they told her. Family history didn’t point otherwise.
Yet Danny had inherited the condition, too, along with a series of other puzzling symptoms.
By the time he was nearly 5 years old in the summer of 2010, he weighed 24 pounds. Air was building up in his abdomen, so doctors switched it so he received total parenteral nutrition, a form of intravenous feeding.
He bounced from hospital to hospital to undergo tests, only becoming sicker. Infections plagued him, and he entered septic shock more than once.
“We still thought they’d be able to fix him,” Mary Anderson said. “We were still very naïve.”
Eventually, Danny was diagnosed with chronic intestinal pseudo-obstruction. His intestinal tract had problems contracting, making it so air and waste couldn’t get pushed through. While the rare condition appears in most people when they’re babies, doctors speculated being tube fed for most of his life cloaked Danny’s case.
The stagnancy also made it so his body would flood with bacteria, causing life-threatening infections. One of the greatest concerns were line infections, where microorganisms latched onto the catheter from which Danny received nutrition directly into his heart.
In May 2012, Danny was hospitalized for another line infection. But once it seemed as if he recovered, the family got the OK to go home to Osmond from the University of Nebraska Medical Center. Instead, they went only 30 minutes away to his grandmother’s house in Omaha. A few hours after being discharged, Danny began to complain that his stomach hurt.
Although discomfort was nothing new for Danny, Mary Anderson sensed something more serious was wrong. Danny and his mother raced back to the hospital, where he was rushed to the trauma center. His bowel had prolapsed, falling in on itself and twisting inside his body.
Surgeons removed more than half of Danny’s bowel, hoping that would solve the problem. Then, line infections struck Danny back to back and his condition worsened. By August, doctors listed him for a small bowel transplant.
“The call” came Nov. 9, 2012.
After receiving his new “tummy,” as his mother called it, Danny did OK at first. He remained in the hospital as he recovered from the standard challenges of an organ transplant and a couple of viruses.
Then six months later, his lymph nodes swelled like balloons. After weeks of tests and speculation, Danny was diagnosed with cancer. He had post-transplant lymphoproliferative disorder (PTLD), a complication suffered by around 2 percent of transplant patients.
As the doctors tried to treat Danny, he developed a severe allergic reaction to one of his medications. His skin began to peel so drastically, doctors considered putting him in a burn unit. To make matters worse, his body was rejecting the bowel transplant. Surgeons went in over and over again trying to cut out the pieces that were causing the rejection, but nothing worked. The PTLD lessened for a while but came back along with a virus as Danny’s immune system weakened from the treatment.
“He was dying pretty much,” Mary Anderson said.
Danny doesn’t remember most of the times when he was really sick. The medications knocked him out and clouded his memory. He has no recollection of the times his mother would run through the hospital as fast as she could to get outside and away from the room where he was trapped. He doesn’t remember the doctors removing his bowel and reconfiguring his anatomy to make up for its loss.
He knows he’s sick. He has to live it every day and sometimes wakes from nightmares in which he’s taken a turn for the worse.
But what he remembers most is the past two years, healing and growing up “relatively healthy,” mostly at home.
They call him “Super Danny.” Always have, ever since he was obsessed with the cartoon “Super Why” as a toddler.
He had a life-size cut-out of the Flash, his current favorite hero, during his transplant. His mom used to move it around, putting it in unexpected places to scare the nurses.
He got the chance to be a real hero, too. When he was 4 and getting sicker, his family took a trip to Disney World and he mostly slept. He got the chance to fight Darth Vader but “flipped out” and had to be grabbed off the stage before the battle could begin.
But he went back to the park on a Make-a-Wish trip in December 2014. He finished the job, dueling Darth Vader and some storm troopers twice.
“In the same day,” Danny said.
He’s always been high-spirited, ever since he was a baby. When he was younger, he had such difficulty with his speech that he just wouldn’t talk.
“He didn’t know how to say he was hurting so he would be rough,” Mary Anderson said.
The nurses tell her, though, that being ornery is good. It’s what’s kept Danny fighting.
He has big dreams, too. Even though he can’t eat, Danny aspires to be a chef. In the hospital, he’d get room service nearly every day, assembling tacos and chopping meat for chef’s salads.
When he was really sick, he’d want to make gingerbread houses. But as his mother started constructing them, he’d only watch for a little while before falling asleep.
“I became a gingerbread house expert,” she said. “We had quite the village. It was bad.”
But a healthier Danny has different concerns. Back home in Osmond, he squabbles with his brothers about sharing the Xbox.
The town is their home, Mary Anderson said. Despite Danny’s main hospital being UNMC in Omaha, she has no plans to move. Her other boys — Christopher, 18, Connor, 12, and Dillon, 8 — all have their friends there. And the school is small enough that Danny can attend on a specialized schedule and still stay with his class.
But life is far from normal. Every day, Danny spends 16 hours hooked up to intravenous nutrition. He drags the 3-liter bag around the house with his foot. The severe allergic reaction to his medicine caused his skin and eyes to become very sensitive, so he tends to wear sunglasses even while inside. Issues with the tubes and bags that vent air and liquid from his abdomen and the catheter in his heart land him in the hospital — but for far briefer stays than in the past.
His anatomy has been reassembled in such a bizarre way that most local doctors won’t touch him. During a recent surgery at UNMC, a doctor spent 15 minutes trying to find an organ before consulting an X-ray and figuring out everything was located “backwards.” There are mere inches of some organs left, including his stomach and colon.
The only real “fix” for Danny is a quadruple organ transplant. He needs a liver, small bowel, colon and pancreas, which he’s been listed for since September.
Even then, doctors tell Mary Anderson that Danny will only be trading one set of problems for another. He’ll need numerous types of medication each day, including drugs that repress his immune system so his body doesn’t reject the new organs.
Danny’s mom knows a lot of the medical terminology, throwing out phrases like PICC line, ileostomy and TPN with ease. When Danny was first getting sick, it helped her to go over all the charts and lab reports, to look at the situation clinically.
There’s no time for breakdowns. There’s no choice to be anything other than a mom, she said.
Before Danny was listed for another transplant, she considered going back to nursing school. But once she knew the call could come at any second, she decided to wait until Danny’s transplant to consider college. The anxiety was too much for her after a while, and she got a part-time job as an assistant manager at Family Dollar in town.
“It’s been more challenging, but it at least makes the time go by faster,” she said.
When the call comes, she’ll have to take at least six months off work, and that’s if it all goes smoothly.
Mary Anderson’s eldest son, Christopher, will help take care of his brothers when Danny gets his transplant. A recent high school graduate, Christopher plans to attend Northeast Community College so he can stay close to his family.
“He’s a huge help,” Mary Anderson said. “(Without him) I don’t know what we would’ve done.”
She’s also grateful for the nurses and doctors who have brought Danny to this point and the friends who have supported her.
If it all works out, Danny should one day match his brother and only have a g-tube in his belly. When this happens, his mother promises him they’ll go to a water park. Her hope is buoyed by the other children who have received the same transplant Danny is slated for and are leading fairly normal lives.
Danny’s especially fond of a 9-year-old girl named Emily Somerville who’s had the quadruple organ transplant he’s waiting for twice.
“I run the halls with my girlfriend,” Danny said, pleased to define their relationship. “Me and my girlfriend are troublemakers.”
They’re planning a wedding at the hospital on July 6. The officiant will be his favorite clown. Most of the nurses can come, too, except maybe the one who adores Danny too much.
“She’s out of my league,” he explained.
But the road ahead for “Super Danny” is long, and Mary Anderson doesn’t know if people realize that.
“You have this image … that you get the transplant and it’s done and everything is good and you go on your way,” she said. “It’s a lot more in-depth.”
Want to help?
Donations toward Danny’s transplant surgery can be made through the Children’s Organ Transplant Association (COTA) at bit.do/donateDannyA. Updates on Danny’s condition also can be found on Facebook on the page “Super Dannys New Tummy.”